I am back from my visit with my new LLMD in MO. I was going to post earlier, but the trip really took its toll on me. I am much sicker than I was before going.
I just don't know how I can do this every four months (12 hr drive one way). If I don't get better, it'll kill me! I had some scary moments on the way there and back. I felt like I could barely lift my arms.
I am still trying to process the information given to me. There's just too much. I don't have significant cognitive issues fortunately, but physical weakness and other issues make concentrating so hard. Maybe that is cognitive?
This LLMD BOMBARDS you with handouts and information. I can't imagine an extremely ill person could follow along.
The visit was interesting. Lots to do. I'm nervous, but hoping it'll get me on the road to recovery AND hoping my insurer will pay for some of these scripts.
I'm starting to feel like I'm 95 years old at the pharmacy. All I can say is I pray these LLMD's know how to clinically Dx correctly. It's a scary situation for a patient.
Posted by Keebler (Member # 12673) on :
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I like to envision it as the LLMD SHOWERING me with a set of keys to success. You saw one of the very best LLMDs in the country. You are in excellent hands.
Good luck with the process. It's a lot to take in and it will take time so take care. The next time, you might consider stopping overnight along the way. A 12-hour drive can take a toll. It would be great if a friend could go with to share the drive and make it a bit more enjoyable.
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Posted by ugagal (Member # 18471) on :
I'm glad you made it back safely! Sounds like the LLMD will be getting you on the right track. Goodluck with your insurance covering all the new scripts....so far my insurance company has paid for all of mine.
Posted by Tincup (Member # 5829) on :
Seek...
Glad you are back.... and I was waiting to hear a report.
So thanks for that.
You have good help there. Very good.
Posted by seekhelp (Member # 15067) on :
I am unable to drive. My wife did it all (thank goodness). I appreciate it. We did break the trip up into two-day rides of 6-7 hrs each. Straight drives are too much.
Depending on $$$, it'll force us to determine how to proceed next time. Multiple hotels, rental car, etc. adds up fast.
I agree he is a very good LLM. Quite a difference from my other one in his approach and knowledge.
Posted by asummers (Member # 18068) on :
Seekhelp, I see the same LLMD and I had the same comments you did about being Bombarded with information at the 1st visit - it was a blur. I thought to myself, I don't even have neuro lyme and the info took me 4 days to read through and understand. So I couldn't even start the meds right away he prescribed b/c I was reading all the protocols to follow. A lot of the info given is very helpful, and the other info I ignored b/c it didn't pertain to me. That's how I got thru it and didn't feel overwhelmed (after 4 days of reading).
Posted by TerryK (Member # 8552) on :
You might find it less tiring and less expensive to take a one day plane trip. Just a thought, I have no idea if this is doable or how it would work out financially. You would have to crunch the numbers.
I fly to CA from Oregon and home in one day. It is much cheaper than driving in my case.
Sorry it was so tiring. I hope you start to feel better and the trip is easier next time.
Terry
Posted by map1131 (Member # 2022) on :
seekhelp, rest. The reading can wait till later. Don't try to cram all of it in. You only one to start on one "protocol" at a time.
You can't jump right into everything. Breath, now relax. Slow.....
Pam
Posted by Dekrator48 (Member # 18239) on :
seekhelp,
I am glad your first visit is behind you.
Take your time and sort through everything so you understand all the instructions.
At least you only have to go every 4 months. My LLMD requires visits every 4 weeks.
4 months from now you may even be starting to see some improvements....who knows!!!
It's good that your wife goes with you, so there are 2 sets of ears to listen to the LLMD.
She could also take notes for you, if there is anything not on a handout that you want to remember.
One step at a time.....recover from your trip first.
Things won't seem so overwhelming when you are rested.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by seekhelp:
I agree he is a very good LLMD. Quite a difference from my other one in his approach and knowledge.
I'm so happy YOU are happy with him! You'll do fine. Maybe soon you could stretch those visits to 6 mo at a time? Not sure when he allows you to stretch it out. Maybe ask him next visit.
Get some rest!! Posted by seibertneurolyme (Member # 6416) on :
Seek,
So does this mean your wife now believes you are sick and that you have Lyme disease and coinfections?
Bea Seibert
Posted by Hoosiers51 (Member # 15759) on :
I agree with the poster that said you should consider flying (fly in that morning, out that same night), then either rent an economy size car without the insurance (that is where they rip you off) or take a cab to the Dr's office.
Airfares are super cheap this summer because the airlines are hurting. Some fares are between $39-99.
If you don't stay overnight, you will save money not only in gas (and wear and tear on your car), but you won't have to pay to stay somewhere, and to eat multiple meals "out."
I know flying nowadays can be a hassle (they are never on time anymore, so allow yourself extra time), but it's something to consider, especially with the reductions in prices.
Posted by lpkayak (Member # 5230) on :
if your insurance won't pay you can tell doc and he knows what drugs will do the same job the cheapest. its only $3. to call nurse
Posted by CherylSue (Member # 13077) on :
Hi Seekhelp,
Sounds like the same LLMD I've been seeing for the past 18 months. Our trip is almost 8 hours by car.
Just keep trying to do what the doc says. I couldn't tolerate a lot of the meds, but kept with the ones that did help. It was slow going with a couple of limited relapses along the way.
I've been working full time since August. I've been improving slowly, and I'm currently funtioning about 85-90%. I still want that 100%. I've had this illness for almost 9 years. I was 15% at my worst.
We have so few options, so stick with it.
Good luck. CherylSue
Posted by mojo (Member # 9309) on :
Seek: I truely think you are on the right path. Dr. C will get you well, I am confident of that.
Some of my good friends see him and they are very very happy with his treatment.
Posted by METALLlC BLUE (Member # 6628) on :
Who are you seeing?
Posted by METALLlC BLUE (Member # 6628) on :
Nevermind, I know who. What is everyone's opinion of him? If anyone wants to give an anonymous patient report for the Lyme List just PM me with your experiences with this LLMD.
Posted by seekhelp (Member # 15067) on :
Bea, yes my wife is much more convinced now.
However, I was just informed today by my PCP of 9 years that I surely do not have lyme period. He said I am CDC negative on both the IgM and IgG and I'm wasting my time.
All of my chills, fatigue, weakness, muscle twitching, spasms, muscle pain, bone pain, nausea, stomach pain, breathing issues, hot flashes, and 20 other symptoms are the result of my newly diagnosed fibromyalgia, chronic fatigue, weight issues, and DEPRESSION.
I was told to stop Abx immediately. I guess that LLMD visit was for not. Posted by Dekrator48 (Member # 18239) on :
seekhelp,
Just be sure to go pay your PCP a visit after you've recovered.
It is so frustrating when the patients know more than the Dr's.
Posted by seekhelp (Member # 15067) on :
Maybe an anti-depressant would do me good. The doc said he did notive a decrease in energy levels over the years. Hard to be happy when you have days you feel like it may be your last.
Posted by TerryK (Member # 8552) on :
Time to get a new primary. I wouldn't let em' stop you from getting help. They aren't the ones who will have to live with "fibromyalgia".
I was told that I have fibromyalgia and Chronic Fatigue Syndrome. Funny how so many of my symptoms have improved or are gone with lyme treatment. Pain was horrible and was progressing rapidly and now down by 70%!!
If you can't educate your primary, then try to find a doctor who will be supportive or at least get out of the way so that you can get the treatment you need.
So sorry. Hang in there.
Terry
Posted by METALLlC BLUE (Member # 6628) on :
Your PCP is out of his mind, period. How do you like them apples?
Posted by Ocean (Member # 3496) on :
Seek,
I just went to a PCP today (haven't had one in 12 years, I stopped seeing doctors after my CFS diagnosis).
I gave her current labs and meant to make sure my negative Elisa was not in there. It was and she saw it and said, "Now this says you don't have Lyme Disease, did you see this?"
ARGH!!!!
Oh well, at least I got a holter monitor out of her, which I wanted some type of reassurance with heart issues that I've had.
It bummed me out too, but she called it "LymeS disease" EEEK!!!
So I know she knows nothing about Lyme.
Glad you had a good appointment.
take care, Ocean
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Dekrator48: [QB] seekhelp,
Just be sure to go pay your PCP a visit after you've recovered.
Yes, sweet revenge!
and YES, consider the anti-depressant! I can't do without mine and I'm not even in treatment!
Posted by seekhelp (Member # 15067) on :
Lymetoo, did the treatment make more difference in your health than the anti-depressant? Just wondering what symptoms were relieved. Did it get rid of the chills?
I always think of these drugs as helping with mood issues, not as much physical symptoms, but maybe the two go hand in hand.
Posted by lpkayak (Member # 5230) on :
i had to give up my pcp cuz she said if i took the dortef my llmd prescribed she wouldn't see me again
for 5 yrs every time i saw her she was pushing antidepressants on me every time i tried on i freaked out cuz of how it made me feel
but we are all different-i know i can't take them unless i am practically catatonic...then only for 3 months-i have done that a few times in my life---work up to high dose then work off.
if i get depressed i walk...no matter how slowor how short...it makes my depression go away.
some ppl need them and do well...but i would let your llmd decide that and prioritize your llmd tx...not the primary
Posted by seekhelp (Member # 15067) on :
I'm going to have my PCP something. I find it so strange that since I've been on Doxycycline for three days now, all of a sudden my fatigue has lifted somewhat, my chills are gone, etc.
Could it be Doxy just happens to have an off-label use for depression which I am told I'mk suffering from causing these issues? Hmmmm. It can't be Lyme, right?
If Doxy has these effects, maybe I can cure myself with an anti-depressant.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by seekhelp: [QB] Lymetoo, did the treatment make more difference in your health than the anti-depressant? Just wondering what symptoms were relieved. Did it get rid of the chills?
Not sure what you're asking. The treatment helped the Lyme and the anti-deps helped the depression.
Posted by Lymetoo (Member # 743) on :
Lyme causes depression, so it's possible that the doxy is improving the Lyme .. most likely the doxy is removing brain inflammation.
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I appreciate it. We did break the trip up into two-day rides of 6-7 hrs each. Straight drives are too much. ![[Mad]](mad.gif)
I wouldn't let em' stop you from getting help. They aren't the ones who will have to live with "fibromyalgia".